IT WILL BE 10 years in May since a doctor came in to my 21 month old son’s hospital bedroom to inform me that his test results had come back and that he had a disease called cystic fibrosis (CF).
To be honest CF meant nothing to me at the time, but from the concerned look on the doctor’s face I knew the prognosis was not good.
The next weeks and months were spent learning about CF and coming to terms with a disease that at the time had a life expectancy of just eighteen years. Coming from a small town in Kerry, we were quickly brought up to speed on local people who had passed away from CF, with ages ranging from 6 months to 17 years. There seemed to be no light at the end of this tunnel.
Also around this time we were referred to the cystic fibrosis department at the National Children’s Hospital in Tallaght. The CF team in Tallaght helped us develop a more positive picture of CF and informed us, that with a strict regime of physio, a high calorie diet and proper medication, our son would go on to have an active lifestyle and would, like his peers, go to college.
The positive attitude of the CF team in Tallaght has helped us to this day to deal with our situation. Ten years on he has an active lifestyle like all his classmates – even more so than some.
As cystic fibrosis is a progressive illness, the need for hospital accommodation (both in-patient and out-patient) increases as the patient gets older. With low immune systems it is imperative people with CF are treated in isolated ensuite rooms in hospital.
This issue has been highlighted very often in the media by adults with CF over the last few years and has lead to progress in some hospitals. Being from Kerry I knew my son would transfer from paediatric care in Tallaght to Cork University Hospital (CUH) when he reached 16. However, CUH had no adult clinic with individual rooms and no isolated ensuite in-patient bedrooms.
A year after my son was diagnosed with CF I became involved in fundraising to benefit various CF projects, enlisting friends, family, and the CF community. After raising significant amounts of money, five years ago I decided to form the Build4Life/Cystic Fibrosis (B4L) charity.
With no staff, no administration costs and no expense accounts and with a simple one- line mission statement, “To develop out-patient and in-patient CF facilities in CUH where 25 per cent of Irelands CF population attend”, we have managed to raise €3,000,000.
On the 1 June 2011, we opened what is now generally accepted as one of the world’s most advanced adult CF clinic in CUH. The clinic has five ensuite clinical rooms, reception, nurses’ station, gym, conference room, kitchen and associated storage rooms.
Each patient will have the use of an iPad for use in their care and for social purposes. It also boasts the most advanced air purification system available. The adult CF patients can now attend their clinics knowing they will be segregated from other patients which will minimise the risk of cross infection.
With the adult clinic complete one of our next projects is the isolated ensuite bedrooms for adults with CF. These bedrooms will be located in the vacated ward 5B in CUH and will be part of an acute respiratory ward which will accommodate not only adult CF patients but also patients with other chronic respiratory illnesses like COPD, lung cancer and chronic asthma, among others. Build4Life/Cystic Fibrosis is the only charity funding Ward 5B which will cost €3,000,000. B4L will provide €2,300,000 with the balance coming from the HSE.
We have now also turned our attention to developing paediatric CF facilities through our Build4Life4Kids campaign. We will fund the development of a childrens CF clinic and the isolated ensuite in-patient bedrooms. Established less than one year ago, we are now just €800,000 short of providing world standard hospital care for our children with CF attending CUH.
The charity is officially 5 years old as of last month. There will be no party to mark the occasion, but we have been nominated as a chosen charity for this year’s Ring Of Kerry cycle, The cycle is Munster’s largest single day fundraising event and for a lot of people it has become part of their “bucket list”. Over 6,000 cyclists take part in the Killarney event each year and we’re hoping it will be a big event to raise life-saving funds for our family and friends with this terrible disease.
In the near future Build4Life/Cystic Fibrosis will have provided all hospital accommodation needs for both adult and paediatric CF patients in CUH. This will lead to a better prognosis for them adding many years to their lives.
Joe Browne is the Chairman of Build4Life/Cystic Fibrosis. For more information on doing the Ring of Kerry cycle, click here.
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